WHEN the Revd Rachel Noel received her diagnosis of autism, at the age of 42, her archdeacon suggested that it might be wise not to make the information public.
“He wanted to protect me, and explained that people would misunderstand, and, based on stereotypes, it might be better not to share,” she recalls. “In some ways, he was absolutely right. It would have been safer for me not to share. I couldn’t not share, because, for me, this was really exciting news. . . It helped me understand who I had always been.”
Having been diagnosed while serving her title, in 2017, she began her incumbency at St James’s, Pokesdown, last year, and became a member of the Bishop’s Council. The decision to take another post in the Church was “one of the hardest choices, because it had cost so much to walk through what I walked through”, she reflects. In recent years, she has been told that she would not have been ordained had her diagnosis been known earlier, and would have been offered prayer for release from demons.
During her first incumbency, she was encouraged to “try and be more like other people”. She remembers coming to the realisation that what she was facing was “corporate misunderstanding and ignorance”.
Yet there have been positive aspects of her walk, too. The Bishop who licensed her in her first incumbency was supportive, encouraging her to “find a way for me to be me”. Last year, the Acting Bishop of Winchester, the Rt Revd Debbie Sellin, led an affirmation-of-ordination service in Pennington.
The Archdeacon “listened, encouraged, and supported me until the diocese was able and willing to recognise that my life story, my CV, the same one they used to select me for ordination, is the one that was also used to diagnose all these conditions”, Mrs Noel says. Being open about her autism with congregations has opened up conversations and encouraged people to “talk about what’s real rather than have to just fit”.
RACHEL NOEL’s route to diagnosis was unusual: she had a manic reaction to anti-depressant medication which resulted in being sectioned and, a few weeks later, being diagnosed with bipolar disorder, ADHD, a sensory-processing disorder, and autism. But securing a diagnosis as an adult places her in part of a wider story about a growing awareness of, and understanding of, autism.
Current estimates suggest that about one per cent of the population in Western countries is autistic; but, in Autism: A new introduction to psychological theory and current debate (Routledge, 2019), Sue Fletcher-Watson, Professor of Developmental Psychology at the University of Edinburgh, and Francesca Happé, Professor of Cognitive Neuroscience at King’s College, London, note a “sharp rise” in adult diagnoses. Some researchers believe that prevalence is much higher.
What is autism? The National Autistic Society defines it as “a lifelong developmental disability which affects how people communicate and interact with the world”. But, “if there’s one thing everyone can agree on, it is that autism is complicated,” Fletcher-Watson and Happé write.
Rebecca and Samuel Chapman
From the language used to describe autism — the subject of “intense and passionate debate” — to a “shifting and subjective set of diagnostic criteria”, they are careful throughout the book to acknowledge all that remains unknown about autism, all that is contested, and the need for both humility and sensitivity, given a clinical and academic history “laden with tragical examples of negative characterisations . . . leading to misguided and sometimes abusive treatments”.
While research suggests that autism arises from the interaction of genetic and environmental factors, little progress has been made in determining a biological basis; autism is currently recognised on the basis of behavioural features. For a diagnosis to be made, there must be evidence of both “atypicalities in social and communication behaviours” and “the presence of restricted and repetitive behaviours”.
Within these categories exists huge variation. While we can say that “some” or “many” autistic people “might” or “may” have certain forms of behaviour or experiences, any generalisation is impossible. But, these caveats given, Professors Fletcher-Watson and Happé suggest that “talking about autism in terms of difficulties understanding what other people are thinking is a useful conceptualisation for neurotypical people new to the condition.”
LANGUAGE matters, when it comes to autism. Among the editorial choices made by Professors Fletcher-Watson and Happé is the avoidance of “any use of medical and deficit-focused terminology”. They write, instead, of “a pattern of differences which present advantages and disadvantages in relation to neurotypical social norms and expectations”.
An important concept here is “neurodiversity”. It was first coined in 1998 by Judy Singer, an Australian sociologist and a member of the online network Independent Living on the Autism Spectrum (InLv), who posited that all humans were “neurodiverse”: each one of us has a unique brain. Furthermore, differences that result from this diversity — in thinking, learning, and behaviour, for example — are not to be viewed as deficits. Central to this approach is that autism is not something to be fixed, or cured. Autistic people’s differences encompass strengths.
In her guide for the diocese of Oxford, Welcoming and Including Autistic People in our Churches and Communities (Features, 17 August 2018), Ann Memmott, a professional autistic adviser, offers a detailed exploration of a range of differences and strengths. Autistic people have brains “designed to take in a vast amount of detail”, she explains. In environments with a great deal of “incoming sensory information”, this can result in “brain overload”. As a result, known situations and routines are often preferable, while sudden changes of plan can be distressing.
Sensitivity to sensory stimuli is another factor. An autistic person might be hypersensitive: certain sounds, smells, textures, and tastes can be experienced as overwhelming, or hyposensitive, which can manifest in difficulty recognising hunger, illness, or pain. A combination of both is common.
RACHEL NOELParallel Lives
“Research shows that autistic people are more likely to ‘play fairly’ with others and be more honest,” Mrs Memmott notes. “Most are very dedicated, and passionate about specialist topics. Many are able to do vast workloads in specialist areas of work. Recent research shows that autistic people tend to give more to charities, and be more passionate about social justice.”
It is important to note, Professors Fletcher-Watson and Happé add, that the neurodiversity model should not preclude providing support for autistic people, or denying the challenges that they and their families can face. Autism is associated with intellectual disability in many cases, including limited verbal communication. Also reported are higher rates of anxiety, depression, and epilepsy. On top of this, autistic people navigate a world largely suited to neurotypical people. “For many people, it’s not autism that is a problem, but all the baggage that goes with it,” the Professors observe.
The evolution of the “neurodiversity” model has also undergone scrutiny in autistic communities. In his contribution to An Introduction, Martijn Dekker, the founder of InLv, expresses concern that some neurodiversity activists “promote a specific and prescriptive ‘paradigm’ that, by claiming there is no such thing as a suboptimal neurological configuration, excludes autistic people who find themselves disabled or broken.
“Too often, I hear of autistic people joining a group of neurodiversity advocates hoping to meet kindred spirits, only to find themselves being told precisely what to believe, how to identify, and how to communicate, with any perceived transgression resulting in a swift ban.”
IN RECENT years, an increasing number of memoirs have been published by autistic authors, including Christians. In his memoir On the Spectrum: The gifts of neurodiversity (Brazos, 2021), Daniel Bowman, Jr, an English professor and US Episcopalian, provides a raw account of life before his diagnosis, which included intense feelings of loneliness and alienation, depression, and suicidal ideation. “The story you tell yourself about yourself . . . is that you’re not normal, that you’re an awful human being,” he writes. “For those of us who follow Christ, we believe we’re doing that badly, too. . . We live with intense guilt and shame.”
A poet as well as a professor, he suggests that, for many, “the very notion of an autistic person steeped in the arts is new.” Among ideas that he seeks to address is “the tired notion of us as robots that do now know how to relate”: “my autistic friends are every bit as — and frequently more — feeling, compassionate, and caring as my neurotypical friends.”
The book also contains reflections on the experience of attending church:
”We’re doing ‘popcorn prayer’ in my small group, and although they say you can ‘pray as you feel led,’ the expectation is very clear: everyone in the group will pray. I’m the only one who hasn’t offered up a petition because my selective mutism has decided to kick in; or my senses are overloaded from the worship band’s volume and intensity; or I’m practising in my head what to say but I’m nervous and know the words won’t come out right; or I’m afraid that my concerns — the confessions and petitions I want to offer up — are so markedly different from those I’ve just heard that I’d better keep it simple. . .”
“Like most people on the spectrum, I need some structure and predictability,” Professor Bowman writes. “Surprises are challenging. Unwanted physical exchanges can be difficult. I often can’t sustain eye contact, and shouldn’t have to.”
He praises the “marvellous predictability” to be found in his Episcopal church through liturgy, tradition, and the church calendar. But he also reflects on the challenge of serving at church — “Can I say no to service and ministry as often as my autistic needs dictate and still bear good fruit?” — and concludes that the “faithful acts of service” which he can do, praying for his students and spending time with his family, are no less worship than serving with the homelessness outreach project.
FIONA MACMILLAN, a trustee of Inclusive Church and chair of the Disability Advisory Group at St Martin-in-the-Fields, believes that most of the Church is “probably 40 years behind” when it comes to understanding autism, “still awash with myths, stigma, and a deficit-based understanding of autism”. Things are beginning to change, she suggests, but slowly.
At a 2019 conference on neurodiversity, faith, and God, run by Inclusive Church and St Martin-in-the-Fields, the testimony shared was sobering, she recalls. “Some of those who attended had lost their jobs after coming out as autistic, others had been turned away from a call to ordination, had an awful experience at theological college or curacy, or been blamed for doing things differently.” Yet many had continued to work “on the edge of churches, building networks and community, sharing experience and ideas”.
The Revd Dr Lamar Hardwick, lead pastor at Tri-Cities Church in East Point, Georgia
Gatherings such as this are an example of “radical pockets of inclusion”, she suggests. A Facebook group for neurodivergent church leaders has been running since last year, and she is aware of “wonderful autistic priests” who are bringing about change in their dioceses.
Identified as autistic in her forties, Ms MacMillan describes herself as “multiply disabled and neurodivergent”. She uses a wheelchair and has auto-immune neurological conditions, ADHD, and Tourette’s syndrome. “A medical model would describe these as impairments, but, for me, they are simply who I am, describe how I think, communicate, and sense the world, which may be differently to others,” she says.
“This was news to me, probably because we all regard ourselves as normal. In comparison to other people, I have physical and vocal tics, often set off by environment, sound, heat, light, fatigue, caffeine; I find it harder to focus, can’t read body language, and have a degree of face-blindness. But I have, apparently, exceptional recall, make uncommon connections, use words with particular precision, and spot patterns and details without trying. I’m honest, direct, and oblivious to hierarchies.”
Her own ideas about autism were shaped by “all the 1950s myths: all white boys with a learning disability or genius, socially awkward; so it felt something to be ashamed of,” she says. While many “deeply damaging myths” exist around autism, “enormous” strides in the understanding of autism have been made in the past 30 years, she believes.
“I’ve felt the call to be more open in order to make it easier for others. It’s a leap of faith, and, although many people have been accepting or simply curious, I’ve not always had helpful responses. . . It’s hard to be on the end of yet more discrimination, but that’s the risk of being open, of living authentically. I understand why so many people don’t.”
Elected to the General Synod in 2021, and then to the Ministry Division Committee for Ministry of and among Deaf and Disabled People and the national disability task group, Ms MacMillan has pioneered the establishment of a neurodiversity task group, scheduled to meet for the first time in June.
She has also, at the invitation of the diocese of London, developed a neurodiversity training programme, in partnership with Mrs Memmott. A series of one-hour introductory sessions, with longer follow-on sessions set to be launched in the autumn, it is being delivered by a small, all-autistic team of researchers, trainers, and practitioners. The 150 places for the first five sessions, part of continuing ministerial development, went in 72 hours. While the training is initially being made available to clergy, children’s and youth workers, bishops and diocesan senior staff, the expectation is that it will be rolled out more widely in due course.
THE Revd Jonathan Bish, Priest-in-Charge of Batley, in the diocese of Leeds, was diagnosed as autistic, aged 13, after a prolonged period of “quite serious mental health and behavioural problems”. Attending a Presbyterian church in the United States was a positive experience, he recalls. “I was, for the most part, accepted for who I was, and my way of seeing the world — described by one friend at the time as ’socialising through arguing’ — was one that was welcomed rather than seen as problematic.”
But his experience of selection, appointment, and ministry in the Church of England was “mixed”. While he recalls warmly the retired archdeacon who served as his DDO, his memories of theological college are less positive. “I certainly felt like myths about autism were used to characterise me, and it was only after eight years in ministry that I felt safe disclosing that I was autistic again,” he recalls.
“I think the Church has a tendency to pathologise autistic people so that any criticisms they offer of the institution or its ways of doing things are characterised as a ‘product of the autism’. . . In my view, a large part of the Church tends to find it is easier to characterise people who hold more systematic theologies as ‘problematic’, especially if they are critical of leadership in the Church, than to value their contributions; and that particularly affects autistic Christians.”
The appointment process is a “minefield”, he says. “The most important part of most processes is an interview panel, where autistic candidates will almost certainly struggle with issues around eye contact, misunderstanding questions or second-guessing their responses, even if in most social situations they manage fairly well.”
The common request to “tell your story” can also be a “nightmare”, he says. “I’ve been told after one such interview that ‘The panel didn’t see the real you,’ which is a hard thing to hear as an autistic person, as the ‘real you’ is something you constantly have to not show the wider world. . . For autistic people, it is particularly hard to find the right balance between authenticity and employability.”
When it comes to the suggestion that autistic people struggle with non-literal or unsystematic aspects of faith — something explored in Stewart Rapley’s Autistic Thinking in the Life of the Church (SCM, 2021, Books, 18 February 2022) — he has some qualms. “As a culture, we tend to privilege the spontaneous, the informal, and, things which are transgressive or ‘rule-breaking’,” he observes. “That has had a considerable impact on how we present the gospel in the church: how many times have you heard Jesus described as a ‘rebel,’ ‘radical,’ or ‘revolutionary’?
RACHEL NOELBaby Tree
“There are good reasons for presenting Jesus in this way, but there are equally good reasons for presenting him as a giver and interpreter of rules; as the architect of a new form of spiritual life; and, of course, as the Logos which brings life and order to creation. So, I would argue that the fact we often see the autistic desire to systematise as a problem, is one that is driven heavily by trends in what we value in the world that have emerged since the cultural revolutions of the 1960s.”
He is also interested in questions of truth and charity, and the privileging of the latter over the former in the Church and more widely. “The downside of this is that we sometimes don’t tell people difficult truths out of a misplaced desire to be nice,” he says. “If you’re autistic, truth is what you naturally consider to be most important — sometimes, at the cost of charity. I think that affects how autistic people do theology: finding the ‘right answer’ can sometimes take priority over everything, including tact, kindness, and good sense. . .
“[But] the Church of England often gives the impression of being terrified of doctrine, to the extent that we forget that the truths of the faith are supposed to be ’saving truths.’ Thinking that ‘right belief’ or right practice is important isn’t about putting impossible demands on people; instead, it is important because knowing our faith well is something which changes and transforms Christians into faithful disciples.”
IN RECENT years, the hashtag “Actually autistic” has become popular online. It indicates that the person speaking is autistic, as opposed to someone who writes or speak about autism who is not themselves autistic. Ms MacMillan says that, in the Church, much of the theology of autism has been written by non-autistic people. This is also beginning to change.
In The Autism of Gxd (Wipf & Stock Publishers, 2022), the autistic theologian Ruth M. Dunster explores “a kind of innate autism poetically inherent in poetic, atheological, and mystical discourses”. She formulates an “autistic trinity” of “mindblindness”, literal-mindedness, and fascination and obsession. Drawing on apophatic theology, she argues that all three can shed light on our thinking about God. When it comes to literal-mindedness, for example, it has the power to “resurrect” the figurative power of “dead metaphors”. An autistic approach would stay with the image rather than unthinkingly translate it back into its “common-sense” meaning: “this absurdity can become a powerful theological hermeneutic. . . Incarnation and Resurrection are free to be clearly baffling, taking their full power of mystery seriously.”
Other recent contributions include Autism and the Church: Bible, theology and community (Baylor University Press, 2019), by Professor Grant MacAskill, Kirby Laing Chair of New Testament Exegesis and co-director of the Centre for the Study of Autism and Theology at the University of Aberdeen; and Peculiar Discipleship: An autistic liberation theology, by Claire Williams, a teacher and researcher at Regents Theological College (a Pentecostal Bible college in West Malvern), due to be published by the SCM Press in June.
Fr Bish, whose MA thesis explored disability theology and St Bonaventure’s theology of creation, recommends “reading more medieval Franciscans”.
“Bonaventure thinks that the great multiformity of creation expresses in seed form ideas which find their true meaning in Christ, the divine mind, and so the greater the diversity we find in creation, the more we can know the mind of God,” he says.
“I would advocate for a theology of autism which sees it as part of this process of contemplating God through his creatures. Instead of a homogeneous concept of the human being as manifesting the image of God through things which are common to every human being, we would do better to speak of different human beings imaging God in different ways. Autistic creatures are beautiful, therefore, because they manifest the mind of God through the weird and wonderful workings of minds that may not be ’neurotypical’, but are none the less made after the pattern of Christ’s own mind.”
IN THE book Disabled Church — Disabled Society: The Implications of autism for philosophy, theology and politics (Jessica Kingsley, 2010 (Books 7 September 2012)), the Revd Dr John Gillibrand, now Vicar of Llandeilo Tal-y-Bont, in the diocese of Swansea & Brecon, writes about how life with his son, Adam, who is autistic with both ADHD and learning difficulties, challenged his theological and philosophical frameworks. “What I have attempted to do is to smash them up against the brute reality of day-to-day life, and then to see what remains,” he writes.
The book is a frank account of the challenges of life with Adam, who, since his teenage years, has lived in full-time residential care. Diagnosed at the age of four, at the age of 17 Adam was still unable to do most of the things on a checklist used by the health visitor for children aged 18 months. Left with “mental, physical and — I would say — spiritual exhaustion”, Dr Gillibrand does not flinch from documenting “experiences of total negativity, of nothingness, of meaninglessness”.
And yet he arrives at the conclusion that “there are certain kinds of things in and through which we are thrown against incomprehension and misunderstanding. It is in those places that meaning is.”
Like Dr Dunster, Dr Gilliband is drawn to apophatic theology, and suggests that there is much that Adam can teach the Church. “Adam cannot give God a name,” he writes. “He cannot say anything about him. To be the best of our knowledge, he cannot understand God. That is a condition which . . . he shares with the human race.” In his “non-elective silence”, Adam is “very close to the most fundamental, the most primordial response to the challenges which the created world offers to us”.
A quandary that Dr Gillibrand returns to is that of speaking on Adam’s behalf. He has to decide, for example, whether or not his son should be confirmed. In the end, the service takes place in the softplay area of Adam’s school. At a simplified eucharist, Adam shouts “It’s a cup!”, leaving his father wondering how to interpret such a response.
RACHEL NOELGod’s Eye
Reflecting on human-rights frameworks and their application to disability, he observes that “the nature of autism presents challenges to the very frameworks within which it is captured. . . As his difficulty with socialisation is an inherent part of his disability, in what way can ‘full and effective’ participation be a desirable intention?”
In An Introduction, Professors Fletcher-Watson and Happé acknowledge that the majority of autistic people shaping research and practice are those without an intellectual disability. “It remains very challenging to engage directly with autistic people who are minimally verbal or learning disabled.” While the viewpoint of parents can be “valuable” (they observe earlier that parents have been “fundamental . . . to the creation of infrastructure and knowledge about autism”), these may not “easily reconcile” with the perspectives of autistic people.
They raise important questions about who speaks about, for, and on behalf of autistic people: questions that Dr Gillibrand has considered. “I would never claim to speak for disabled people, and I would share anyone’s horror if I did,” he says. “But there is, then, this important proviso: that Adam cannot speak for himself. . . In those circumstances, I, and Gillian, and Adam’s brother Peter have no choice but to speak on his behalf, and, on occasions, to hold the line for him. We need be inclusive in our thinking about disability, and always to include Adam.”
His book concludes with a letter to Adam: “You live in a world that does not allow you to be the author of anything. But it was you who made this book and not me. You are the author of this. Thank you for the words.”
IN HER book Motherhood and Autism (SCM, 2021), Dr Eilidh Campbell, a practical theologian at the University of Glasgow, whose son, Micah, was diagnosed as autistic at the age of six, writes that “how much to share, and to what extent the sharing will cause potential hurt or embarrassment to my child and our wider family, is a deep concern for me.” Her aim, she explains, is to help others — not only mothers of autistic children, but a wider readership, given that “the lived experience of parents affords significant potential in generational theological insights.”
Mothers like her are, she suggests, “silenced, often ashamed, in their struggle; caught between love for their children and utter exhaustion”. Those she interviews emphasise that “their children were not sources of sadness for them — nor even necessarily their condition — but, rather, it was facing the complex, unexpected, and ever-changing challenges and social barriers that autism brought to their lives was the problem.”
In an echo of Dr Gillibrand’s intellectual inquiry, Dr Campbell explores the inadequacy of various theological frameworks for her experience. Most fruitful for her were “theologies that focus on women’s lived experience” and, in particular, the significance of the “everyday struggle”. For her, this has been a work of creativity, from transforming her son’s room into a sensory tent to buying compression sleeves that he could wear under his school uniform. These are acts of resistance against “institutional barriers to our children’s well-being”.
She arrives at a theology of acceptance, of “pragmatic unresolvement”, writing: “Theologies that acknowledge our human limits, and the often theologically irreconcilable nature of struggle and suffering as part of our human experience, arguably offer a more holistic and realistic model of inclusion. . . Instead of looking to faith to provide explanations or solutions, such an approach suggests that perhaps God gifts us with the theological wisdom we need to deal with the suffering and unresolvedness that comes from being human.”
REBECCA CHAPMAN, a Southwark diocesan lay representative on the General Synod and a member of the new neurodiversity task group, has written a blog, Three Boys and a Bike, about her experience as the mother of Samuel, who, aged three, was diagnosed as autistic in 2016.
It is a “challenge” deciding how much to put in the public domain, she says, but having discovered a “lack of awareness, and lack of understanding” in her local community, she feels strongly it is helpful for parents to tell one another about their experience — information that is not always easily accessible. “Reading someone else’s experience written down is better than nothing, and, if that makes any of us better parents, more aware parents, I think that is a really good thing.” It is complemented, she emphasises, by seeking out the views of autistic adults.
Although keen to celebrate Samuel’s gifts, including his visual memory (“his brain is amazing”), Dr Campbell’s account of struggle is one that Mrs Chapman relates, to, she says. Recounting her visits to Samuel’s school, where advocating for his needs includes creating briefing sheets with pictures, she reflects that “it feels horribly un-English sometimes to be the one making a fuss.
“But there is a lot of making a fuss, because, if you didn’t, you would get a diagnosis and a leaflet for the National Autistic Society and walk out of the meeting, and nothing else would ever happen. We’ve got an amazing school with a great head teacher . . . but the only person who is going to really fight for my kid is his family.”
Church has been a particular struggle at times, she says. At an Evangelical church that the family attended, “it was very unstructured: you wouldn’t ever quite know how many songs you were going to sing at the beginning; the quality of the music and how much it even hurt my ears, was quite mixed. Our Sunday school was very ‘talky-at’.”
The family currently attends St John the Divine, Kennington, after Samuel joined the choir through his school. In a blog post, “Inclusion is good, but belonging is better”, Mrs Chapman describes Samuel’s successful stay at a residential church-choir camp (“It seems like our lively, quirky, autistic eight-year-old found somewhere he could belong”). On a typical Sunday, she explains, “we cross off the page numbers as we go through the liturgy. . . It’s very sensory: there’s the smoke, a beautiful choir, the predictability: it’s the same words every week.”
But the family also attends an Evangelical church, where, as Samuel puts it, “it’s kind of easier to go with the flow.” This comment has left Mrs Chapman curious about whether neurodiversity may be subject to less judgement in environments where you “kind of expect the unexpected”; where, “if you leapt up, stuck your hands in the air, and spoke in tongues, that would be entirely acceptable.” She hopes that, by spending time in different traditions, Samuel will “feel comfortable in whatever style of church he wants to choose for himself as he gets older”.
Hosting the OurCofElike account on Twitter last month gave Samuel the opportunity to write about his own reflections. “Autism is a form of neurodiversity where people tend to have a brain that will normally work differently in some situations and also means that most autistic people see the world differently,” he wrote. “This can mean some autistic people create work at a different standard to the majority of peers around them — higher or lower. For example I can struggle in English and handwriting but greatly exceed in arithmetic.”
IN THE final chapter of An Introduction, Profesors Fletcher-Watson and Happé suggest that, since the first edition of the book in the 1990s, “things have changed for the better” for autistic people and their allies, including increased awareness, tailored educational provision, and a more sophisticated approach in the academic community. But there is still a long way to go, the authors write. While awareness may be high, understanding remains low.
RenoufDesignThe Revd Rachel Noel
Much work also remains to be done exploring the experience of people from Black, Asian, and minority-ethnic (BAME) groups, who remain underrepresented in research. In a recent blog, the Revd Dr Lamar Hardwick, lead pastor at Tri-Cities Church in East Point, Georgia, and the author of I Am Strong: The life and journey of an autistic pastor (eLectio Publishing, 2017) and Disability and the Church: A vision for diversity and inclusion (IVP, 2021), reflects on being diagnosed at the age of 36.
Among the barriers to an earlier diagnosis, he suggests, is “cultural camouflage . . . how one’s culture or ethnicity may be a factor in how others experience and perceive my autism.” Noting a recent finding that black and Hispanic children without an intellectual disability may not be identified as autistic at the same rate as white children, he wonders, “Is it possible that I went undiagnosed because a young black boy displaying autistic traits was simply considered a difficult child?” Bias and prejudice exist “even in our own autism community”.
His observations echo some of the findings of a 2014 report by the National Autistic Society, Diverse Perspectives, which drew on 13 focus groups with 130 participants, almost all of whom were parents, siblings, and carers of children with autism. Some parents felt “that there was an assumption that black boys are badly behaved and more liable to social exclusion”.
Some participants also felt that the understanding of both autism and normal child development was lower in some communities than in the wider population, and, on occasion, “views within families or communities that someone or something was to blame for the child’s behaviour caused a delay to assessment and diagnosis.”
For some, the solution or cure had been seen to be physical discipline or prayer. While some reported that their faith “gave them strength and helped them to be resolute and accepting of their circumstances”, others spoke of facing “judgemental attitudes and a lack of support from faith groups and at places of worship”. Among the case studies was that of Bo, who felt that some people at her church believed that disability was a form of spiritual attack.
The report also explores the tension that can be created by visits to a “home country” where attitudes to disability may be different: “Discussions about how to respond to a child’s autism diagnosis had exposed wider family tensions about whether the second generation is maintaining the ‘home’ traditions and faith or is becoming increasingly westernised, including through their understanding of autism.”
The lack of role-models, or high-profile examples of people with autism from BAME communities, was highlighted, as were struggles in getting access to support, including professionals who lacked cultural understanding and interpreters who “misunderstood or inserted their own cultural assumptions”.
Other issues included different styles of communication: “It was suggested that people from some communities tend to express themselves more volubly and passionately than most British people, particularly when they feel frustrated or ignored. Professionals can misinterpret this as volatility and aggression, labelling parents as overbearing and difficult.”
FOR churches that seek to improve their understanding, Mrs Memmott’s guide includes practical suggestions, beginning with a two-minute read on “quick low-cost things to make a difference for autistic people”. This includes considering the lighting in each room, providing quieter spaces, clear instructions in orders of service, and avoiding physical contact unless it is initiated.
More detailed information follows, including explanations of how the typical components of a service might be experienced by an autistic person, and detailed advice on work with children and young people.
For Mrs Noel, who leads training on neurodiversity for assistant curates in the diocese of Winchester, it is important to acknowledge that “no one way of doing church will ever be absolutely right for absolutely everybody.” She gives the example of the different needs that she and her daughter have when it comes to hugs: “I am very sensitive to touch. My daughter needs really strong touch. That’s really hard, because we can’t get it right for both of us, all of the time, we really can’t. And that can be true in church with all sorts of things.”
But a good place to start, she suggests, is to avoid making assumptions about people’s behaviour, and to subject to scrutiny ingrained ideas “of what a serious Christian looks like”, which may “automatically mean autistic people are never really seen as quite part of the body”. Autistic people may struggle to make eye contact, or need to leave a service if it becomes overwhelming.
They may, she says from personal experience, look different when they pray (she has been “slowly learning to let people see what I actually look like when I’m praying . . . crocheting, or fiddling with something, or looking at a picture or window, or rocking”).
A misconception that she has come across in her ministry is that autistic people struggle with empathy, and that this may compromise their ability to deliver pastoral care. “I think neurotypical people think they can intuit more than they can, and they work on their assumptions of what they’ve intuited,” she says. “As an autistic priest, I think I do pick things up, but I also am much more likely to ask a question. . .
“As someone that has also been the recipient of pastoral care, I have quite a strong reaction to that ‘head on one side, soft insipid voice’ that people sometimes will tend to switch into, because, for me, my experience of that is it is very othering. . . I don’t do that sort of pastoral care. I think, for me, it’s always about trying to connect with that person or people in a situation they are in, and to be with them, to talk with them, to hear where they are at, to ask what they need.”
“I think the best accommodation we can make as a Church is to simply be ready for some people to behave a little differently from what’s normal or typical,” Fr Bish says. “Tolerance and patience go a long way. If we can accommodate toddlers making unexpected noises in churches because they’re toddlers, and that’s what they do, we should also be able to tolerate an autistic adult staring off into the distance while speaking in a monotone, because that is what autistic people do, unless they have spent a long time and a lot of effort training themselves otherwise.”
“Understanding the gift of neurodiversity is what makes the difference — and it begins to make it possible for all kinds of minds to take part,” Ms MacMillan says. “As I often say, we’re all a combination of needs and gifts, and, when our needs are met, our gifts can flourish.”